hi just wondering if anyone anywhere is starting herceptin on or around 12th august. i thought as its a year long treatment it might be nice to have someone to share moans groans and happy times with. i am dreading it. infact scared stiff. is this normal. i gave up chemo cos i couldnt cope i hope this is better. have a good weekend all.
Hi jal7777,
I am going for my "Herceptin appointment " on 18th August at the Christie hospital. I recieved my appointment in the post this morning. It just says planning/chance to ask questions etc so I won’t be actually starting the drug on that day.
I finish rads 8/8/08.
When I spoke to them recently they mentioned that the first 2 doses will be given on a saturday at the christie and then if things go well the rest will be given at home.
I would be happy to share the journey…a year does sound a long time doesn’t it?
love Kay x
Hi you are so lucky having it at home.
How did you fix that are you private. Where is the Christie hospital. Yes lets keep in touch. I am not having a meeting straight into it on 12th at 9.30. I have been told it takes one and half hours to give it but i have to stay in unit till around 4,30 in case of any reactions. Apparently the first one is a loading dose. After that its just one and half hour every three weeks. I chose not to have it near weekend in case of reaction i wasn’t going to be kept in hospital all weekend waiting for a doc on monday morning ha ha. Good luck and keep in touch.
What was your dx and treatment plan if you don’t mind sharing.
Have a gt rest of weekend wet here in bedford.
luv juliexxxx
Hi
I am having number 7 next week and want to reassure you.I was kept for 6 hours on first one to check for a reaction,number 2 was an hour and a half,number 3 was an hour and now having them over 30 minutes,same dose but given quicker.I have mine on a Wednesday,and my only reaction is a bit of a runny nose over the weekend.So relax its not anywhere as bad as past experiences.
Good luck
Mary
xx
Thank you Mary for your kind reply. i must say you have made me feel a lot better already.
julie x
I’m having No. 8 this coming Thursday, but I am still getting them at the hospital over one and a half hours. What with the waiting time beforehand, flush throughs and the time it takes to administer I am usually there for 4 hours or more.
Wish I could get it at home…or at least over 30 mins!
Hi Julie,
Sorry haven’t replied sooner. I am trying to wean myself off the site a little bit as I have got into pattern and was on every day and I realised that it is about time I depended on it a bit less.
I am not private. Apparently that is how the system works at the Christie. It is in Manchester. The nurse who seems to be the main specialist/organiser rang me at home to say she was off for two weeks and would see me on the 18th as soon as she got back.
From what I understand there is no choice about which day you go for the first 2 goes…she said it would be a Saturday- all day for the first one and a half day for the second.
The people who come to your house are a mobile team who are already trained chemo nurses and rather a lot of them were nurses at the Christie originally- for this area, although I understand there are quite a few branches around the North West now. Will let you know more when I find out.
The only other thing she told me was that I would have an ultra sound scan at Wythenshawe hospital before the drug regime begins and will have one every 12 weeks after that to monitor my heart.
I was asked in outpatients some time ago whether I would take part in a study about cardiac function and Herceptin to which I agreed. It is only information gathering from my notes - no extra tests/procedures etc so I am not sure whether every 12 weeks is the normal order of things or to do with that?
I had a grade 2 , 3.5cm lump removed and the surgeon took about a10cm mass of tissue approx 1/4 of my breast. I was given the choice of this plus definately radiotherapy and possibly chemo or mastectomy -on the day of the biopsy. They said that there was only a 2 % difference in recoccurence at 5 years.
I did end up having the chemo- Epi + CMF. I had my surgery on 1st Nov and started chemo 15th Dec 2007 & finished on Fri 13th June. This they decided was because I was pre- menopausal…though I think the starting the Tamoxifen put paid to that!!! That was started on the one stop clinic day and suspended whilst on chemo. I have the new packet ready for next week after I finish rads. deep joy.
We had a pretty damp Sunday here in the High Peak too. Not that I care about that any more I am just glad to be alive to feel it!
How about you?
I have just started a “positive living” course at a centre about 10 miles away. It is one day a week. (for 12 weeks) which is mainly about relaxation, helping to get /keep your immune system well, etc. I am also having Reiki there for an hour each time. I don’t believe or disbelieve in it as I don’t really understand it but I keep an open mind and it certainly was nice to relax etc which I am not usually good at. Far too busy and attacking life at full pelt.
Thanks Mary and justme for your comments too,
Cheers for now,
Kay
Hello Jal
I finished my year of Herceptin last May. Compared to chemo it really is very easy. The first one is a long day as they keep you for several hours afterwards in case you have a bad reaction so take a good book. I was there for 8 hours altogether the day of the first Herceptin but had no bad reaction - just stiffness and slightly painful arm and leg muscles but I was fine the day after.
After that I had very few problems. The the only side effect I had was a runny nose which appeared each time about a week after the Herceptin infusion. My nose got blocked up and I found that breathing steam was a great help.
Good luck.
Anthi x
Hi Jal7777 & all
I’m due to start Herceptin end August. Don’t have a date yet. I’ll be having it alongside Taxotere for the first four months and then indefinitely after that. I’ve got bone mets recently diagnosed after 5 months since primary dx. Would be good to share experiences on this thread.
Alison
I have an appointment with my onc on 20th August - had my last radiotherapy today and was laying there waiting for the buzzing when told machine had broken down - so grand finale - had to go on another one.
Anyone starting Herceptin in August who goes to Leicester Royal Infirmary. Rather dreading going back to chemo suite (love the way its called suite, as though it was a posh hotel!) . I have got quite phobic about needles and veins so not really looking forward to it, but hey if it makes me well, I can’t complain, too much anyway. Anyway hope all goes well for us.
Judy x
Hi Julie,
How’s things ? I have finished my radiotherapy today …yippee!!!
Am looking forward to a few days at the seaside to chill out a bit and a well deserved large chocolate pudding of some sort- one that requires planning permission and scaffolding!
Won’t be on line again before you go for your “first date” so good luck and I will be thinking about you on the 12th …let us know how you get on,
love Kay.
HI IM DUE TO START HERCEPTIN IN THE NEXT FEW WEEKS IM WORRIED ABOUT THE FIRST ONE AND DONT KNOW WHAT TO EXPECT ITS GOOD TO HEAR THAT ITS NOT AS BAD AS THE CHEMO AS I FOUND THAT AWFUL DIDNT THINK I WOULD GET THROUGH IT AT TIMES,IM ON TAMOXIFEN AND THAT SEEMS TO GIVE ME HOT FLUSHES THINK THAT IS A COMMON SIDE AFFECT
SANDRA
Hi jal7777
I read your thread with interest as I too have decided not to continue with chemo. I see my oncologist on Thursday but I don’t know whether he will still let me have Herceptin if I don’t complete the chemo course. I wondered which chemo you were on and how many did you have before you stopped?
Polly x
hi polly
i didnt complete my chemo either and was still allowed to start herceptin. so made no difference to me, hope u r the same.
maria
ps herceptin is a doddle compared to chemo
Hi,
I’ve had 8 lots of Herceptin so far - it really is easy, it does take quite some time - 2 hours at the hospital every 3 weeks - so not too bad. It will be great to have a buddy through this.
K
Hi Maria
Saw my onc today. He wasn’t too happy with my decision to stop chemo, but respected my decision anyway. He is going to let me have Herceptin and I start on 22nd August. You say it is a doddle compared to chemo, have you had any side effects?
Polly
Hi polly,
Compared to chemo, it’s a breeze - although the searching for a vein is hurting more and more, but I think chemo etc ruined them. I have had sore through a few times after Herceptin, but nothing major - general tiredness, but that could also be attributed to me being a mother of small ones.
You do whatever is best for you.
goodluck,
Karen
Hi Everyone
I had my first herceptin on 12Th. I was worried the day before. In tears the morning of it but not actually sick. I kept thinking everyone says its a doddle compared to chemo. Well i was in hospital at 9.15 they kept trying to warm my hand to get a vein. They want me to wear a glove or put a heat pack on hand for my hours journey. That might help. We got there eventually and it didn’t hurt. It was over quite quickly but i had to wait 4 hours before i could leave in case of side effects reactions etc. Its horrible waiting to be ill… Anyway last half hour dragged. but again i got through it and no side effects. Its now Friday and still OK so hoping it doesn’t get worse each dose and if it don’t i will be ok. Its just the hospital thing i have to cope with. Mind you i felt i could have gone clubbing after my first chemo, little did i know further on i would be so sick i had to stop at no 4.
KAY well done for getting through your rads. and good luck for your herceptin.
POLLY. we are brave giving up chemo but we know when we had enough. I had four out of 6 doses. I was on fec. and as long as i had 4 i could have herceptin. The reason is it works best with 4 plus chemo sessions. Anyway take care all i have 17 to go now. Next one 2nd sept… keep in touch.all.
Julie
Hi Julie,
Glad it went ok for you. I have been watching for your 1st post-Herceptin post! I have a Hickman line in so not concerned about the veins so much. Veins getting much better though still 3 “tramlines” visible and obvious and a dark patch on the back of my hand.
Quite worried about the first dose as I am allergic to lots of things. Did the staff do your pulse, blood pressure etc during the 4 hours or just a visual observation? My best friend has lent me a chickflick to read to while away some of the time.
I have been for my pre- Herceptin echocardiogram at a different hospital today.
What are upto over the weekend…anything nice?
I am taking a friend to hospital for minor surgery, waiting and then bringing her home again tomorrow…talk about coals to Newcastle!!!
Have a good one,
Love Kay x
hi polly
no side effects at all,not even the runny nose that people seem to get.
maria
take care